A core bibliography prepared for a workshop November 16, 1999
Updated and expanded December 21, 2005; April 23, 2010; May 31, 2013
by Brenda Pfannenstiel, MALS, MA, AHIP
Manager of Library Services
Kreamer Family Resource Center and Health Sciences Library
Children's Mercy Hospital & Clinics
2401 Gillham Road
Kansas City, MO 64108
There are many parenting books (e.g., Christophersen E, Mortweet S. Parenting that works. Washington D.C.: American Psychological Association; 2002, available on Kindle 2009), which I won't list here. I would only suggest that you include parenting books that acknowledge different ethnic groups (e.g., Thompson, G. A Brighter Day: How Parents Can Help African American Youth. Sauk Village, IL:African American Images; 2010.), multiple births (e.g., Flais, SV. Raising Twins. Elk Grove Village, IL: American Academy of Pediatrics; 2010), and different family configurations (e.g., Johnson S, Carlson J, Bower E. Grandloving. Lancaster, VA: Heartstrings Press; 2010; Dad to Dad, Elk Grove Village IL: American Academy, 2012).
A good medical dictionary is vital to any consumer health collection. Consider Mosby's Medical, Nursing, & Health Professions. 9th ed. St. Louis: Mosby; 2012 which is written more accessibly than a Stedman's or Taber's and which includes many color pictures and illustrations, along with appendices covering pediatric developmental milestones, nutritional content of foods, Spanish-French-English equivalents of common medical terms and phrases, conversion charts, etc.
If you have one shelf for pediatric consumer health, consider these:
Shelov SP, ed. Caring For Your Baby and Young Child: Birth to Age 5 5th ed. Elk Grove Village, IL: American Academy of Pediatrics, 2009available in English and Spanish; see also other books for newborna through adolescence from the AAP Bookstore at http://www.aap.org/
Schmitt BD. My Child Is Sick!. New York: Bantam; 2005.
Altmann T. Mommy Calls Elk Grove Village, IL: American Academy of Pediatrics; 2011. Available from http://www.aap.org/
Mayer G, Kuklierus A.What to Do When Your Child Gets Sick. La Habra, CA: Institute for Healthcare Advancement; 2012. Low literacy book available in English, Spanish, Korean, Chinese, and Vietnamese from http://www.iha4health.org/ See also What to Do for Teen Health, What to Do When Your Child Has Asthma, What to Do When Your Child Is Heavy, etc.
Offit PA, Moser CA. Vaccines and Your Child. New York: Columbia University Press; 2011.
Remember the drug information on MedlinePlus at http://www.nlm.nih.gov/medlineplus/druginformation.html
Taketomo CK. Pediatric & Neonatal Dosage Handbook, 19th ed., Lexi-Comp, 2012.
Dietz WH, Stern L. Nutrition: What Every Parent Needs to Know. 2nd ed. Elk Grove Village IL: American Academy of Pediatrics, 2011.
Bruns D. Feeding Challenges in Young Children. Paul H. Brookes Pub. Co., 2012.
Huggins K. The Nursing Mother’s Companion. 6th ed. Harvard Common Press, 2010.
Wynbrandt J, Ludman MD. Encyclopedia of Genetic Disorders and Birth Defects New York: Facts on File, 2008 and/or NORD at http://www.rarediseases.org/
Singer JL. The Special Needs Parent Handbook. 2nd ed., CreateSpace Independent Pub., 2012.
Pellegrino L. The Common Sense Guide to Your Child’s Special Needs. Paul H. Brookes, 2012.
Zaichkin J. Newborn Intensive Care: What Every Parent Needs to Know. 3rd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2010. Excellent description of ECMO and other useful information for the parent of a child who is off to a rocky start. Available from http://www.aap.org/
If you have the space and $, consider collecting books on common, long-term medical problems such as asthma, autism, hydrocephalus, juvenile diabetes, epilepsy, cerebral palsy, congenital heart defects, cystic fibrosis (Orenstein DM. Cystic Fibrosis. 4rd ed. Philadelphia PA: Lippincott Williams & Wilkins ; 2011) Down's Syndrome, neuromuscular disorders, premature babies (Gunter J. The Preemie Primer. Cambridge MA: Da Capo Lifelong Books; 2010 and others), etc. See information on publishers and vendors, below.
If you are building a more comprehensive pediatric consumer health collection, consider also:
Bissell CM. Pediatric Tracheostomy Home Care Guide. Sudbury, MA: Jones & Bartlett, 2008.
and remember that many books for rare childhood conditions are not available from major publishers, e.g. Myositis and You. Washington, D.C.: Myositis Association; 2007 available at https://www3447.ssldomain.com/myositis/store/Details.cfm?ProdID=439
You will have to hunt for books and videos on disease-specific web sites.
Consider books about how the human body works, and picture books that promote acceptance of children with medical differences, e.g.,
Senisi EB. All Kinds of Friends –Even Green. Bethesda, MD: Woodbine House; 2002.
Skead R, Simmel M. Mighty Mike Bounces Back: A Boy’s Life With Epilepsy. Magination Press, 2011.
or that describe common medical experiences
Hest A. Don't You Feel Well Sam? Cambridge, MA: Candlewick Press; 2002.
Zonta P. Jessica’s x-ray. Toronto: Firefly Books; 2002.
Duncan D. When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children. Windsor, CA: Rayve Productions; 1994.
Anything from JayJo Books "Special Books for Special Kids" series, e.g.:
Bryant JE. Taking Speech Disorders to School. Plainview, NY: JayJo Books; 2004.
Henry CS. Taking Cancer to School. Plainview, NY: JayJo Books; 2001.
Woodbine House (www.woodbinehouse.com, 800-843-7323) Excellent books for children and for adults on disabilities, some also in Spanish. If you have a population coping with lifelong disabilities this collection is a great resource: ADD, autism, cerebral palsy, deafness, Down syndrome, spina bifida, etc.
Patient-Centered Guides (www.patientcenters.com) for a growing list of books on childhood cancers, wheelchair selection, mental health, etc. Do purchase Nancy Keene’s Childhood Leukemia book.
Child’s Work, Child’s Play (http://www.childswork.com/)–JayJo Books’ Special Kids in School Series, mostly for ages 5-10(http://www.childswork.com/JayJo-Books/), Dillon and Friends books for children under five (http://www.childswork.com/Dillon-and-Friends/). Find more child therapy resources at Guidance Group (http://www.guidance-group.com/)
American Diabetes Association (http://www.diabetes.org/ )The Store has books about raising kids with diabetes, and lots of cookbooks. Some in Spanish. See also:
Juvenile Diabetes Research Foundation bookstore http://jdrf.org/life-with-t1d/bookstore/
Epilepsy Foundation of America (http://www.epilepsyfoundation.org/) has affordable books and videos in English and Spanish, for children and adults in its store. (http://image2.source4.com/welcomehybrid.asp?Category=-1&Itm=111622)
Paul H. Brookes Publishing (http://www.brookespublishing.com/) for books with an advanced reading level on child development, education, and disabilities.
Magination Press (www.maginationpress.com/) American Psychological Assn. has children's picture books on fears, therapy, foster care, eating disorders, etc.
National Cancer Institute (https://pubs.cancer.gov/ncipl/home.aspx?js=1)—free! Includes smoking cessation, nutrition, and cancer treatment, some in low literacy format.
Boys Town Press (counseling resources) http://boystownpress.org
Boulden Publishing (counseling resources) http://www.bouldenpublishing.com/
Centering Corporation (grief resources) http://www.centering.org/
Brain Injury Association Marketplace Bookstore http://www.biausa.org/
Kids with Heart Bookstore (congenital heart defects, etc.) http://kidswithheart.org/
Baby Hearts Press http://www.babyheartspress.com/ (congenital heart defects, etc.)
NCES (Nutrition Counseling Education Services) http://www.ncescatalog.com/ or 1-800-251-9349 or email@example.com
Zero to Three bookstore (early childhood) http://www.zerotothree.org
Hilton Publishing (http://www.hiltonpub.com/bookstore) publishes Hope & Destiny, and Hope & Destiny Jr.—books about sickle cell dieease and trait.
National Braille Press http://www.nbp.org/
Special Needs Books http://www.specialneedsbooks.com/ --another place to track down disability books for and about kids are specialty book stores like this.
If you have space and $, consider children's book series on diseases and health from http://listbuilder.scholastic.com/ (browse by Dewey category 610s), Lerner at http://www.lernerbooks.com, and the popular books at Kane/Miller (Everyone Poops, The Gas We Pass) http://www.kanemiller.com/.
Omnigraphics--think twice! Expensive titles, which in authority, currency, and readability do not often improve upon what can be readily found on the more responsible WWW sites. Be selective when considering this series. Phone 800-234-1340. http://www.omnigraphics.com/
Majors http://www.majors.com/ (Now owned by Baker & Taylor)
There is a vast array of suppliers for brochures on child care, safety, disease and drug topics, but brochures and pamphlets are a headache to keep organized and current so you may elect not to keep that information. Remember that local, state and federal government agencies may have brochures that they will give to you. Brochures are intended as give-aways rather than as part of your permanent collection, so keep them in mind to purchase for health fair exhibits or to hand out to library visitors. Increasingly, such information is available on the World Wide Web to be printed as needed; see web site listings below.
Parenting magazines such as Parenting, American Baby, etc. have columns on health, safety, and nutrition. Many children's magazines such as Child Life, Humpty Dumpty, and Turtle have a regular column called "Ask Dr. Cory." There are many magazines and newsletters devoted to specific disorders. If your shelf space and funds are limited, consider these:
Exceptional Parent (www.eparent.com) --for parents of disabled children; this glossy magazine offers useful articles on living with a disability, ads for extra-large cribs, mobility devices, etc., and publishes an annual resource guide. A first choice for families of disabled children. No longer available as a print subscription; password controlled. Problematic for libraries, but this journal is worth knowing about and recommending to parents.
ADDitude (www.additudemag.com) –attention deficit disorder
Adoptive Families (www.adoptivefamilies.com)
Allergy & Asthma Today (www.aanma.org)
Choices/Current Health (www.weeklyreader.com) – health education for middle school and high school children.
Epilepsy USA (http://www.epilepsyfoundation.org/resources/epilepsyusa/)
Food Allergy News from FARE (www.foodallergy.org)
Insights into Spina Bifida (www.spinabifidaassociation.org/)
NIH MedlinePlus Magazine (http://www.nlm.nih.gov/medlineplus/magazine/) –Primarily for adults, but free, attractive, and available in English or Spanish.
Nutrition Action Healthletter (www.cspinet.org) –if parents learn to eat better, they will feed their kids better
Quest (http://quest.mda.org) –muscular dystrophies and movement disorders
Sports ‘N Spokes (www.sportsnspokes.com) –wheelchair recreation, mostly adult but inspiring to children and teens with disabilities. Handcycle and racing chair ads. See also Life In Action (http://www.spinalcord.org/life-in-action/) from the National Spinal Cord Injury Association.
MedlinePlus http://medlineplus.gov/ (doctor/hospital/consumer health library directories, growing list of health topics including many relevant to children's health, e.g., asthma, teenage pregnancy, etc., links to authoritative resources, interactive tutorials, drug information, a medical encyclopedia with pictures, in English and Spanish. Some materials in other foreign languages, some in low literacy format.) Note the games and quizzes! Links out to KidsHealth (www.kidshealth.org) with excellent information written for parents, for kids, and for teens.
HealthFinder http://www.healthfinder.org/ (has a section on children but you can also search to find a wide array of useful information, e.g., hydrocephalus; also searches in Spanish)
Mayo Clinic Health Oasis http://www.mayohealth.org/ --limited pediatric content.
Med Help http://www.medhelp.org/ (patients can ask questions of doctors--unlike some "ask the doctor" sites, this one meets high standards--HON code approved)
Family Village http://www.familyvillage.wisc.edu/ (a global community of disability-related resources, note its shopping mall for adaptive clothing and assistive technology, its links to recreation and travel resources, and its search feature which enables you to pull up quality-filtered resources for a given diagnosis. Scoliosis, Apert's syndrome, Down syndrome, ADHD--any kind of birth defect or disability might be found here, with contact information for support, online FAQs and brochures, and web sites.)
Genetic Alliance Directory http://www.geneticalliance.org/ Searchable by organization or by disease/condition; information on newborn screening, etc.
NORD (National Organization for Rare Disorders) searchable by disease or by organization; subscribe to get the full reports but summary reports are free and include links to other resources) http://www.rarediseases.org
Genetics Home Reference http://ghr.nlm.nih.gov/ --Note the handbook that explains genetic concepts (e.g., mosaicism) in “almost” plain language; includes chromosomal conditions, links to patient resources.
CDC Health & Safety Topics http://www.cdc.gov/
Internet Mental Health http://www.mentalhealth.com/ from a Canadian physician, links to a great many psychiatric disorders; do screen for quality of individual links.
CAPHIS http://caphis.mlanet.org/ (Consumer and Patient Health Information section of the Medical Library Association) –Top 100 list, find a consumer health library, etc.
RXlist http://www.rxlist.com (drug information with a forgiving search engine for spelling-challenged searchers; includes pill identifier, dictionary).
Note: if you are affiliated with a hospital library, you may have access to Lexi-Comp Online, which includes patient handouts in plain language, on many drugs, in multiple languages. Choose the Pedi-PAL handouts for information about drug therapy for children. Remember that MedlinePlus also has drug and supplement information in plain language.
KidsHealth http://www.kidshealth.org/ The Parent's section is especially good for infectious diseases, but also has excellent safety information and even information on subjects such as urinalysis. Lots of topics written for kids and teens as well. Now includes preK-12 health lesson plans.
Healthy Children --American Academy of Pediatrics—now in both English and Spanish
(www.healthychildren.org and www.healthychildren.org/espanol) Ages and stages, healthy living, safety, diseases, etc. See also http://www.aap.org
National Dissemination Center for Children with Disabilities http://www.nichcy.org/ (Includes lots of online publications concerning education and disabilities, in English and Spanish; links to state resources also.)
American Academy of Child & Adolescent Psychiatry Facts for Families http://www.aacap.org/cs/forFamilies (multiple languages)
LD Online (learning disabilities and ADHD)
CancerNet Childhood Cancers http://www.cancer.gov/cancertopics/types/childhoodcancers
KidsHealth for Kids http://www.kidshealth.org/kid/
KidsHealth for Teens (Teen Health) http://www.kidshealth.org/teen/
Neuroscience for Kids http://faculty.washington.edu/chudler/neurok.htm
Choose My Plate http://www.choosemyplate.gov/
BrainPOP Health Movies http://www.brainpop.com/health/seeall/ (most require subscription; some free access)
Innerbody (human anatomy) http://www.innerbody.com/
Children With Diabetes http://www.childrenwithdiabetes.com
Bandaids & Blackboards (kids with medical problems go to school) http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
Mercy Bear's Big Adventures http://www.childrensmercy.org/StoryBookTours/
MedlinePlus Health Games http://www.nlm.nih.gov/medlineplus/games.html
A Science Odyssey: You Try It: Doctor Over Time Activityhttp://www.pbs.org/wgbh/aso/tryit/doctor/shockwave-nojs.html
FDA Kids' Home Page http://www.fda.gov/ForConsumers/ByAudience/ForKids/
CDC Youth Tobacco Prevention http://www.cdc.gov/tobacco/youth
FEMA for Kids http://www.ready.gov/kids
Portion Distortion Quiz http://hp2010.nhlbihin.net/portion/
Joe Chemo (tobacco quiz) http://www.joechemo.org/
Kidnetic (food safety, nutrition, healthy activity) http://www.kidnetic.com/
Tox Mystery http://toxmystery.nlm.nih.gov/
By Students For Students (examples of what kids can understand and teach):
Jump Into a Healthy Life (jump rope skills and heart health) http://library.thinkquest.org/5407/index.shtml
Human Body "Blending In But Staying Special" (organ donation, body systems—site by and for elementary students) http://library.thinkquest.org/5777/
Remember, many web sites for associations that support families with particular diseases or disorders have a kids' corner or teen "room" for their younger members. There are many sites devoted entirely to children with specific disorders (e.g., UC and Crohn's at http://www.ucandcrohns.org/; CF Voice Games at http://www.CFvoice.com/), of varying quality. Increasingly, patient community sites include social networking features attractive to young people, but hard to evaluate for safety, accuracy, privacy, etc.
Commercial sources of patient education handouts for pediatricians to give to patients include the following pediatric resources; there are also general patient education companies such as Krames.
Pediatric Advisor from Clinical Reference Systems/RelayClinical Education (McKesson)
This resource is available on many public sites and can be tailored with links for the sponsoring institution. For example: http://www.childrensmercy.org/PediatricAdvisor/?paSearch=*
Patient Education for Children, Teens, and Parents (English or Spanish)
http://www.aap.org/en-us/aap-store/patient-education/Pages/patient-education.aspx Search the Bookstore at www.aap.org
Choose videos for common problems and issues first; depend on access rather than ownership to provide your clientele with videos on less common subjects, e.g., brachial plexus injuries or progeria. What follows are suggestions for relatively inexpensive (under $100) films. Remember that streaming video on the web is increasingly available; MedlinePlus has videos on many diseases and procedures, Healthy Roads Media has videos on common health issues narrated in multiple languages.
Baby Signing Time –this series is popular with parents of typically developing children as well as with children who have hearing loss, autism, Down syndrome, or apraxia of speech. Affordable. (www.signingtime.com)
Blast! Babysitter Lessons and Safety Training (CD-ROM, 2007, for ages 11-14, includes CPR instruction, available from www.aap.org AAP Bookstore)
Down Syndrome: the First 18 Months (108 min., DVD, 2003, available from Woodbine House (www.woodbinehouse.com)
What’s on my plate? (22 min., DVD, grades 6 up, CC, www.learningzoneexpress.com)
Understanding and Assisting People with Epilepsy (15 min., DVD, 2011, http://shop.epilepsyfoundation.org/)
In a hospital setting, you may want to seek out procedural/home care videos such as
Caring for an Infant’s or Toddler’s Ostomy (16 min. DVD, 2007, www.FamilyHealthMedia.com)
I have not purchased videos from all these sources, so--buyer beware. One of my ongoing frustrations about many video catalogs is their failure to indicate copyright dates. These video sources are primarily for consumer health/health promotion/health & safety education, rather than patient education videos that demonstrate and teach specific procedures and patient care.
At-Risk Resources http://www.at-risk.com
Attainment Company (videos, software, equipment for children & adults with special needs) http://www.attainmentcompany.com/
Child Development Media http://www.childdevelopmentmedia.com/
Fanlight Productions http://www.fanlight.com/
Films for the Humanities and Sciences http://www.films.com/
Injoy Videos (birth and parenting videos for teens and adults) http://www.injoyvideos.com/
Learning Seed http://www.learningseed.com/
Library Video http://www.libraryvideo.com/ (Use the Advanced Search feature to limit by format and audience age; best for health and fitness education, not medical problems)
MarshMedia (all health titles available in English or Spanish) http://www.marshmedia.com/
Miller-Fenwick Patient Education Library http://www.milner-fenwick.com/
Pyramid Media http://www.pyramidmedia.com/
Vida Health Communications http://www.vida-health.com/
Patient Education Sources and Miscellaneous:
NIMCO, Inc. (videos, charts, books, CD-ROMs, models) http://www.nimcoinc.com
Anatomical Chart Company (charts, models, books) http://www.anatomical.com/
Denoyer Geppert International (models, charts, CD-ROMs, books, videos) http://www.denoyer.com/
3B Scientific (models, charts) http://www.3bscientific.com/
Channing L. Bete (health education brochures) http://www.channing-bete.com
Krames Staywell (patient education brochures, database) https://www.kramesstore.com/
ETR Associates (brochures, charts, videos) http://pub.etr.org/
Parlay International (health education resources) http://www.parlay.com/
Beyond Play (Early Intervention books, tapes, toys, adaptive technology) http://www.beyondplay.com/
Ablenet (assistive technology) http://www.ablenetinc.com/
Technology for Education, Inc. (assistive technology, books, videos) http://www.tfeinc.com
School Specialty—Special Needs (Abilitations) (physical therapy and playground equipment) http://www.abilitations.com
FlagHouse (therapeutic recreation) http://www.flaghouse.com/
Playscapes (children's environments) http://www.playscapes.com
MediBadge (stickers, novelty toys, etc.—good for health fair and open house giveaways) http://www.medibadge.com
I make no guarantee that this list of pediatric consumer health resources is complete, but it is a place to start. If you have a favorite resource that I have overlooked, please let me know.